Living With Multiple Sclerosis; My Story

Thank you for visiting my MS page.  I'd like to share my story with you.  It's been a very long battle and numerous doctor's trying to get an explanation for what was going on with me, my life and my health.  I never in my wildest dreams thought I had MS.  My symptoms have been going on for years, and ironically began right after I was involved in a quite severe auto accident that left me in agony and daily chronic pain.  I've learned thru support groups that most of us all share the same stories in regards to finally getting a diagnosis for our symptoms.  It shouldn't have to be that way, but sadly with all the HMO's & doctor's just flat fed up with dealing with them, and also, doctor's who just don't care, getting a diagnosis and treatment is not the easiest thing in the world!

I have to "bank" my energy so I'll have some energy to do even simple tasks.  The fatigue is just awful most day's.  The "good day's" are few and far between.  I now walk with a pronged cane & also have to use a "wheeled hand brake" walker when I'm able to "be mobile", I hate the thought of having to have a cane & walker!  But I hated even more having to have my wonderful husband have to help me when my legs won't move or cooperate just to be able to get from one place to another.  When the numbness & weakness strikes my limbs, I realize just how dependant one becomes on having mobility in their limbs.  I also have problems with my vision from time to time, since I wear contacts at first I thought it was my contacts, then I thought it was just the glasses when I put my glasses on, I immediately made an appointment for an eye exam, thinking my glasses & contacts were not the right strength, however, that was not the case.  Of course by time I could get into the doctor for the exam, my vision was no longer blurred.  I also have time's of doubled vision.  Gee, no wonder I get those painful migraine headaches huh? 

I hate it when people find out I have MS and they tell me "well gee you look fine to me", why is that in today's society if your guts aren't hanging out or you don't have a cast on, people assume you are fine??  It's as though people are saying since they can't seem this "invisible" illness that you are fine and don't have any health problems!  My personal motto has since become,, "Walk in my shoe's for just a day when I have relapses with my MS, then tell me I'm fine."  I think if people who are very narrow minded would suffer thru the relapses that I suffer with they would think so very differently.  I know once I began having my health problems I sure thought differently.  Since this illness is an auto immune illness I get everything that is going around, I get colds, the flu, various virus's much easier than I ever use too.  Which becomes quite challenging also when you keep getting sick all the time.

I'm on daily injections of the medication for MS Copaxone.  Even after being on this medication for over a year I still have adverse side effects from the medication.  People always ask me if the medication is helping, and I have to explain that the only way for a MS person to tell if their medication is working or not is to stop taking it, which is something MS people don't want to do!  That can cause more relapses, (which are NO fun at all) and could make your MS progress, so I continue to take my daily injections and hope that the medication is working and keeping the MS from progressing and helping to keep the relapses down.  Sure I get sick of the daily injections,, who wouldn't??  But I'm sure not willing to go the other road of having no medication for this.  Well I just had my second dose of Solu Medrol I.V. drip, and let me tell those of you who may not have had it yet,,, it's NO fun at all!  It leaves the most horrible metalic taste in your mouth for day's!  YUK!!  Plus it gave me horrible Migraine Headaches, which again are no fun!  I did sleep so so the first day, but today, oh boy is it a very different story,, wish I could sleep, but even with the Migraine Headache drugs I can't sleep! :-(

Some day's I wonder just how much I can take, I would love nothing more than to have my "normal" healthy life back, but that is not realistic, so as the saying goes, you have to make the best of a bad situation, or in my case make the most of the bad day's, cherish and fully enjoy the good day's.  When the depression hits full force on the bad day's, I try to think about my good day's and look forward to them again, and although I'm not always successful, I try to keep in mind, that no matter how bad I feel, or how bad my bad day's are, there is always someone someplace a lot worse.

If anyone has a diagnosis of MS they should be on one of the drugs available for MS today.  (Avonex, Betaseron, Copaxone, Rebif or Novantrone; are the available drugs in the US to treat MS)  If you have diagnosed yourself and/or your not on one of the drugs then you most likely don't have MS.  I have known people after I was diagnosed who claimed they had MS too, but they are not on any of the medications designed for treatment of MS.  I just don't understand why someone would claim to have this horrible illness when they don't have it!  MS is not a joke, it's not an illness to be taken lightly, and I highly detest people who claim to have it when they don't have it!  I wouldn't want this illness if I didn't have it that's for sure!!  All the MS medications are quite costly, however there is help available to anyone who doesn't have insurance or prescription insurance to help with the cost of the various medications.  I have provided links below that you can visit and most will help with the cost of the medications, or check with your state's governor's office, I've found that many states have programs available to help also.

Don't Assume

Don't assume that because I look well that I feel well. Looks can be very deceiving. Many days I look great but feel terrible.

Don't say "I know how you feel." No one knows how anyone else feels. We all have varying thresholds of pain, and pain cannot be measured.

Don't tell me about your aunt and her MS and how she managed in spite of it. I am doing the best I can.

Don't tell me "it could be worse" I don't need to be reminded.

Don't decide what I am capable of doing. Allow me to make those decisions. There may be times I'm wrong, but I'll know soon enough.

Don't be upset that you cannot ease my problems. It won't do any good for both of us to be miserable.

Don't ask how I am feeling unless you really want to know. You may hear allot more than you are prepared to listen to.

Don't assume that because I did a certain thing yesterday that I can do it today.

Don't tell me about the latest fad cure if there is something legitimate my doctor will let me know.

Do realize I am angry and frustrated with the disease, not with you.

Do let me know you are available to help me when I ask.

Do offer me lots of encouragement.

Do understand why I cancel plans at the last minute, I never know from one day to the next how I will feel.

Do continue to invite me to activities. Just because I am not able to bike ride along with the gang does not mean I can't meet you for the picnic at the end of the trail. Please let me decide.

Here is a list of some helpful links for people who have MS         

Click on the Ribbon to the left to visit the website Champions of Courage.  Linda    Chance of Oklahoma City designed this Ribbon for MS.

    Great job Linda!